Skip to main content
Top
Gepubliceerd in:

25-01-2016 | Original Paper

Factors Influencing the Research Participation of Adults with Autism Spectrum Disorders

Auteurs: Kaaren Haas, Debra Costley, Marita Falkmer, Amanda Richdale, Kate Sofronoff, Torbjörn Falkmer

Gepubliceerd in: Journal of Autism and Developmental Disorders | Uitgave 5/2016

Log in om toegang te krijgen
share
DELEN

Deel dit onderdeel of sectie (kopieer de link)

  • Optie A:
    Klik op de rechtermuisknop op de link en selecteer de optie “linkadres kopiëren”
  • Optie B:
    Deel de link per e-mail

Abstract

Recruiting adults with autism spectrum disorders (ASD) into research poses particular difficulties; longitudinal studies face additional challenges. This paper reports on a mixed methods study to identify factors influencing the participation in longitudinal autism research of adults with ASD, including those with an intellectual disability, and their carers. Common and differentiating factors influencing the research participation of participants are identified and discussed. Factors influencing participation were found to differ both between and within participant categories. We propose a dichotomy whereby factors influencing research participation can be classified as those arising from a participant’s values, which act as either a motivator or a deterrent; and those based on convenience, which act as either an enabler or inhibitor. These findings are applicable to research studies that seek to recruit adults with ASD as participants.
Bijlagen
Alleen toegankelijk voor geautoriseerde gebruikers
Voetnoten
1
Inhibitors can also be properly described as ‘barriers’.
 
Literatuur
go back to reference Balfe, M., & Tantam, D. (2010). A descriptive social and health profile of a community sample of adults and adolescents with Asperger syndrome. BMC Research Notes, 3(300), 1–7. Balfe, M., & Tantam, D. (2010). A descriptive social and health profile of a community sample of adults and adolescents with Asperger syndrome. BMC Research Notes, 3(300), 1–7.
go back to reference Baron-Cohen, S. (2000). Theory of mind and autism: A review. In L. M. Glidden (Ed.), International review of research in mental retardation (Vol. 23, pp. 169–184). Cambridge: Academic Press. Baron-Cohen, S. (2000). Theory of mind and autism: A review. In L. M. Glidden (Ed.), International review of research in mental retardation (Vol. 23, pp. 169–184). Cambridge: Academic Press.
go back to reference Barton, C. A., May, C., Mészáros, D., Matheson, M. C., Jenkins, M., Giles, G., et al. (2012). Reasons for ongoing participation in a longitudinal cohort study. Australian and New Zealand Journal of Public Health, 36(4), 397–398.CrossRef Barton, C. A., May, C., Mészáros, D., Matheson, M. C., Jenkins, M., Giles, G., et al. (2012). Reasons for ongoing participation in a longitudinal cohort study. Australian and New Zealand Journal of Public Health, 36(4), 397–398.CrossRef
go back to reference Beadle-Brown, J., Ryan, S., Windle, K., Holder, J., Turnpenny, A., Smith, N., Richardson, L., & Whelton, B. (2012). Engagement of people with long-term conditions in health and social care research: Barriers and facilitators to capturing the views of seldom-heard populations. (Discussion Paper 2850): Quality and Outcomes of Person-centred Care Policy Research Unit. Beadle-Brown, J., Ryan, S., Windle, K., Holder, J., Turnpenny, A., Smith, N., Richardson, L., & Whelton, B. (2012). Engagement of people with long-term conditions in health and social care research: Barriers and facilitators to capturing the views of seldom-heard populations. (Discussion Paper 2850): Quality and Outcomes of Person-centred Care Policy Research Unit.
go back to reference Bell, K. (2013). Participants’ motivations and co-construction of the qualitative research process. Qualitative Social Work, 12(4), 523–539.CrossRef Bell, K. (2013). Participants’ motivations and co-construction of the qualitative research process. Qualitative Social Work, 12(4), 523–539.CrossRef
go back to reference Bonk, J. (2010). A road map for the recruitment and retention of older adult participants for longitudinal studies. Journal of the American Geriatrics Society, 58(2), 303–307.CrossRef Bonk, J. (2010). A road map for the recruitment and retention of older adult participants for longitudinal studies. Journal of the American Geriatrics Society, 58(2), 303–307.CrossRef
go back to reference Brodaty, H., Gibson, L. H., Waine, M. L., Shell, A. M., Lilian, R., & Pond, C. D. (2013). Research in general practice: A survey of incentives and disincentives for research participation. Mental Health in Family Medicine, 10(3), 163–173.PubMedPubMedCentral Brodaty, H., Gibson, L. H., Waine, M. L., Shell, A. M., Lilian, R., & Pond, C. D. (2013). Research in general practice: A survey of incentives and disincentives for research participation. Mental Health in Family Medicine, 10(3), 163–173.PubMedPubMedCentral
go back to reference Cederlund, M., Hagberg, B., Billstedt, E., Gillberg, I. C., & Gillberg, C. (2008). Asperger syndrome and autism: A comparative longitudinal follow-up study more than 5 years after original diagnosis. Journal of Autism and Developmental Disorders, 38(1), 72–85.CrossRefPubMed Cederlund, M., Hagberg, B., Billstedt, E., Gillberg, I. C., & Gillberg, C. (2008). Asperger syndrome and autism: A comparative longitudinal follow-up study more than 5 years after original diagnosis. Journal of Autism and Developmental Disorders, 38(1), 72–85.CrossRefPubMed
go back to reference Charmaz, K. (2006). Constructing grounded theory: A practical guide through qualitative analysis. Thousand Oaks: Sage. Charmaz, K. (2006). Constructing grounded theory: A practical guide through qualitative analysis. Thousand Oaks: Sage.
go back to reference Clark, T. O. M. (2010). On ‘being researched’: Why do people engage with qualitative research? Qualitative Research, 10(4), 399–419.CrossRef Clark, T. O. M. (2010). On ‘being researched’: Why do people engage with qualitative research? Qualitative Research, 10(4), 399–419.CrossRef
go back to reference Cleaver, S., Ouellette-Kuntz, H., & Sakar, A. (2010). Participation in intellectual disability research: A review of 20 years of studies. Journal of Intellectual Disability Research, 54(3), 187–193.CrossRefPubMed Cleaver, S., Ouellette-Kuntz, H., & Sakar, A. (2010). Participation in intellectual disability research: A review of 20 years of studies. Journal of Intellectual Disability Research, 54(3), 187–193.CrossRefPubMed
go back to reference Derguy, C., Michel, G., M’bailara, K., Roux, S., & Bouvard, M. (2015). Assessing needs in parents of children with autism spectrum disorder: A crucial preliminary step to target relevant issues for support programs. Journal of Intellectual and Developmental Disability, 40(2), 156–166.CrossRef Derguy, C., Michel, G., M’bailara, K., Roux, S., & Bouvard, M. (2015). Assessing needs in parents of children with autism spectrum disorder: A crucial preliminary step to target relevant issues for support programs. Journal of Intellectual and Developmental Disability, 40(2), 156–166.CrossRef
go back to reference Fry, C. L. (2008). Research participation and internal normativity: Understanding why people participate. The American Journal of Bioethics, 8(10), 43–44.CrossRefPubMed Fry, C. L. (2008). Research participation and internal normativity: Understanding why people participate. The American Journal of Bioethics, 8(10), 43–44.CrossRefPubMed
go back to reference Gerber, F., Bessero, S., Robbiani, B., Courvoisier, D. S., Baud, M. A., Traoré, M.-C., et al. (2011). Comparing residential programmes for adults with autism spectrum disorders and intellectual disability: outcomes of challenging behaviour and quality of life. Journal of Intellectual Disability Research, 55(9), 918–932.CrossRefPubMed Gerber, F., Bessero, S., Robbiani, B., Courvoisier, D. S., Baud, M. A., Traoré, M.-C., et al. (2011). Comparing residential programmes for adults with autism spectrum disorders and intellectual disability: outcomes of challenging behaviour and quality of life. Journal of Intellectual Disability Research, 55(9), 918–932.CrossRefPubMed
go back to reference Guest, G., MacQueen, K. M., & Namey, E. E. (2011). Applied thematic analysis. Thousand Oaks: Sage. Guest, G., MacQueen, K. M., & Namey, E. E. (2011). Applied thematic analysis. Thousand Oaks: Sage.
go back to reference Haas, K., Costley, D., Falkmer, M., Richdale, A., Sofronoff, K., & Falkmer, T. (2014). Optimising the recruitment and retention of adults for longitudinal autism research: A mixed methods study. Brisbane: Cooperative Research Centre for Living with Autism. http://www.autismcrc.com.au/reports. Haas, K., Costley, D., Falkmer, M., Richdale, A., Sofronoff, K., & Falkmer, T. (2014). Optimising the recruitment and retention of adults for longitudinal autism research: A mixed methods study. Brisbane: Cooperative Research Centre for Living with Autism. http://​www.​autismcrc.​com.​au/​reports.
go back to reference Harrington, C., Foster, M., Rodger, S., & Ashburner, J. (2014). Engaging young people with Autism Spectrum Disorder in research interviews. British Journal of Learning Disabilities, 42(2), 153–161.CrossRef Harrington, C., Foster, M., Rodger, S., & Ashburner, J. (2014). Engaging young people with Autism Spectrum Disorder in research interviews. British Journal of Learning Disabilities, 42(2), 153–161.CrossRef
go back to reference Howlin, P. (2005). Outcomes in autism spectrum disorders. In F. R. Volkmar, R. Paul, A. Klin, & D. Cohen (Eds.), Handbook of autism and pervasive developmental disorders (3rd ed., Vol. 1: Diagnosis, development, neurobiology, and behavior, pp. 201–220). Howlin, P. (2005). Outcomes in autism spectrum disorders. In F. R. Volkmar, R. Paul, A. Klin, & D. Cohen (Eds.), Handbook of autism and pervasive developmental disorders (3rd ed., Vol. 1: Diagnosis, development, neurobiology, and behavior, pp. 201–220).
go back to reference Hunter, J., Corcoran, K., Leeder, S., & Phelps, K. (2012). Appealing to altruism is not enough: Motivators for participating in health services research. Journal of Empirical Research on Human Research Ethics, 7(3), 84–90.CrossRefPubMed Hunter, J., Corcoran, K., Leeder, S., & Phelps, K. (2012). Appealing to altruism is not enough: Motivators for participating in health services research. Journal of Empirical Research on Human Research Ethics, 7(3), 84–90.CrossRefPubMed
go back to reference Kirkland, S. A., Raina, P. S., Wolfson, C., Strople, G., Kits, O., Dukeshire, S., et al. (2009). Exploring the acceptability and feasibility of conducting a large longitudinal population-based study in Canada. Canadian Journal of Aging, 28(3), 231–242.CrossRef Kirkland, S. A., Raina, P. S., Wolfson, C., Strople, G., Kits, O., Dukeshire, S., et al. (2009). Exploring the acceptability and feasibility of conducting a large longitudinal population-based study in Canada. Canadian Journal of Aging, 28(3), 231–242.CrossRef
go back to reference Lennox, N., Taylor, M., Rey-Conde, T., Bain, C., Purdie, D. M., & Boyle, F. (2005). Beating the barriers: Recruitment of people with intellectual disability to participate in research. Journal of Intellectual Disability Research: JIDR, 49(4), 296–305.CrossRefPubMed Lennox, N., Taylor, M., Rey-Conde, T., Bain, C., Purdie, D. M., & Boyle, F. (2005). Beating the barriers: Recruitment of people with intellectual disability to participate in research. Journal of Intellectual Disability Research: JIDR, 49(4), 296–305.CrossRefPubMed
go back to reference Leonard, N. R., Lester, P., Rotheram-Borus, M. J., Mattes, K., Gwadz, M., & Ferns, B. (2003). Successful recruitment and retention of participants in longitudinal behavioural research. AIDS Education and Prevention, 15(3), 269.CrossRefPubMed Leonard, N. R., Lester, P., Rotheram-Borus, M. J., Mattes, K., Gwadz, M., & Ferns, B. (2003). Successful recruitment and retention of participants in longitudinal behavioural research. AIDS Education and Prevention, 15(3), 269.CrossRefPubMed
go back to reference MacLeod, A. G., Lewis, A., & Robertson, C. (2014). ‘CHARLIE: PLEASE RESPOND!’ Using a participatory methodology with individuals on the autism spectrum. International Journal of Research and Method in Education, 37(4), 407–420.CrossRef MacLeod, A. G., Lewis, A., & Robertson, C. (2014). ‘CHARLIE: PLEASE RESPOND!’ Using a participatory methodology with individuals on the autism spectrum. International Journal of Research and Method in Education, 37(4), 407–420.CrossRef
go back to reference Madriaga, M. (2010). ‘I avoid pubs and the student union like the plague’: Students with Asperger Syndrome and their negotiation of university spaces. Children’s Geographies, 8(1), 39–50.CrossRef Madriaga, M. (2010). ‘I avoid pubs and the student union like the plague’: Students with Asperger Syndrome and their negotiation of university spaces. Children’s Geographies, 8(1), 39–50.CrossRef
go back to reference Magiati, I., Tay, X. W., & Howlin, P. (2014). Cognitive, language, social and behavioural outcomes in adults with autism spectrum disorders: A systematic review of longitudinal follow-up studies in adulthood. Clinical Psychology Review, 34(1), 73–86.CrossRefPubMed Magiati, I., Tay, X. W., & Howlin, P. (2014). Cognitive, language, social and behavioural outcomes in adults with autism spectrum disorders: A systematic review of longitudinal follow-up studies in adulthood. Clinical Psychology Review, 34(1), 73–86.CrossRefPubMed
go back to reference Mapstone, J., Elbourne, D., & Roberts, I. (2007). Strategies to improve recruitment to research studies (Review). Cochrane Database of Systematic Reviews, Issue 2, Art No MR000013. Mapstone, J., Elbourne, D., & Roberts, I. (2007). Strategies to improve recruitment to research studies (Review). Cochrane Database of Systematic Reviews, Issue 2, Art No MR000013.
go back to reference Marcantonio, E. R., Aneja, J., Jones, R. N., Alsop, D. C., Fong, T. G., Crosby, G. J., et al. (2008). Maximizing clinical research participation in vulnerable older persons: Identification of barriers and motivators. Journal of the American Geriatrics Society, 56(8), 1522–1527.CrossRefPubMedPubMedCentral Marcantonio, E. R., Aneja, J., Jones, R. N., Alsop, D. C., Fong, T. G., Crosby, G. J., et al. (2008). Maximizing clinical research participation in vulnerable older persons: Identification of barriers and motivators. Journal of the American Geriatrics Society, 56(8), 1522–1527.CrossRefPubMedPubMedCentral
go back to reference Marcus, B., & Schütz, A. (2005). Who are the people reluctant to participate in research? Personality correlates of four different types of nonresponse as inferred from self- and observer ratings. Journal of Personality, 73(4), 959–984.CrossRefPubMed Marcus, B., & Schütz, A. (2005). Who are the people reluctant to participate in research? Personality correlates of four different types of nonresponse as inferred from self- and observer ratings. Journal of Personality, 73(4), 959–984.CrossRefPubMed
go back to reference Mazefsky, C. A., & White, S. W. (2014). Adults with autism. In F. R. Volkmar, R. Paul, S. J. Rogers, & K. A. Pelphrey (Eds.), Handbook of autism and pervasive developmental disorders (4th ed.). New York: Wiley. Mazefsky, C. A., & White, S. W. (2014). Adults with autism. In F. R. Volkmar, R. Paul, S. J. Rogers, & K. A. Pelphrey (Eds.), Handbook of autism and pervasive developmental disorders (4th ed.). New York: Wiley.
go back to reference Mein, G., Seale, C., Rice, H., Johal, S., Ashcroft, R. E., Ellison, G., & Tinker, A. (2012). Altruism and participation in longitudinal health research? Insights from the Whitehall II Study. Social Science and Medicine, 75(12), 2345–2352.CrossRefPubMed Mein, G., Seale, C., Rice, H., Johal, S., Ashcroft, R. E., Ellison, G., & Tinker, A. (2012). Altruism and participation in longitudinal health research? Insights from the Whitehall II Study. Social Science and Medicine, 75(12), 2345–2352.CrossRefPubMed
go back to reference Nicholson, L., Colyer, M., & Cooper, S. A. (2013). Recruitment to intellectual disability research: A qualitative study. Journal of Intellectual Disability Research, 57(7), 647–656.CrossRefPubMed Nicholson, L., Colyer, M., & Cooper, S. A. (2013). Recruitment to intellectual disability research: A qualitative study. Journal of Intellectual Disability Research, 57(7), 647–656.CrossRefPubMed
go back to reference Ouellette-Kuntz, H., Lunsky, Y., Lysaght, R., Martin, L., & Saaltink, R. (2013). Partnering for research in the field of intellectual/developmental disabilities—Lessons for participant recruitment. Journal on Developmental Disabilities, 19(2), 25–35. Ouellette-Kuntz, H., Lunsky, Y., Lysaght, R., Martin, L., & Saaltink, R. (2013). Partnering for research in the field of intellectual/developmental disabilities—Lessons for participant recruitment. Journal on Developmental Disabilities, 19(2), 25–35.
go back to reference Robinson, K. A., Dennison, C. R., Wayman, D. M., Pronovost, P. J., & Needham, D. M. (2007). Systematic review identifies number of strategies important for retaining study participants. Journal of Clinical Epidemiology, 60(8), 757–765.CrossRefPubMedPubMedCentral Robinson, K. A., Dennison, C. R., Wayman, D. M., Pronovost, P. J., & Needham, D. M. (2007). Systematic review identifies number of strategies important for retaining study participants. Journal of Clinical Epidemiology, 60(8), 757–765.CrossRefPubMedPubMedCentral
go back to reference Thompson, S., & Phillips, D. (2007). Reaching and engaging hard-to-reach populations with a high proportion of nonassociative members. Qualitative Health Research, 17, 1292–1303.CrossRefPubMed Thompson, S., & Phillips, D. (2007). Reaching and engaging hard-to-reach populations with a high proportion of nonassociative members. Qualitative Health Research, 17, 1292–1303.CrossRefPubMed
go back to reference Tishler, C. L., & Bartholomae, S. (2002). The recruitment of normal healthy volunteers: A review of the literature on the use of financial incentives. Journal of Clinical Pharmacology, 42, 365–375.CrossRefPubMed Tishler, C. L., & Bartholomae, S. (2002). The recruitment of normal healthy volunteers: A review of the literature on the use of financial incentives. Journal of Clinical Pharmacology, 42, 365–375.CrossRefPubMed
Metagegevens
Titel
Factors Influencing the Research Participation of Adults with Autism Spectrum Disorders
Auteurs
Kaaren Haas
Debra Costley
Marita Falkmer
Amanda Richdale
Kate Sofronoff
Torbjörn Falkmer
Publicatiedatum
25-01-2016
Uitgeverij
Springer US
Gepubliceerd in
Journal of Autism and Developmental Disorders / Uitgave 5/2016
Print ISSN: 0162-3257
Elektronisch ISSN: 1573-3432
DOI
https://doi.org/10.1007/s10803-016-2708-6